Tuesday, September 17, 2013


I was done with MDS, Graft Versus Host Disease, and everything that came with it. I let go of it in my own time, my own way, and it felt good. I started applying to my dream school, Columbia University. We were looking into medical programs nearby. To me, going to Columbia was another way to say "Screw you MDS, look at me now." In my eyes, it was victory against that awful disease by achieving the dream I had long before I was sick.

Allan & I @ Phoenix Children's
Getting an infusion.
But GVHD wasn't done with me. The Rituximab stopped working and was causing too many side effects so the doctors started me on a new medication called Gleevac. My liver enzymes elevated substantially. In other words, my liver put its foot down. (Can you blame it? After all of the toxic medications and treatments that its been forced to metabolize, it's allowed to say no, I suppose.) So, that left one choice: steroids. Oh, steroids. Like the saying "With great power comes great responsibility" steroids warning label should read "With great power comes great amount of awful side effects." But they are effective and quickly got the GVHD under control. I had a few flares and it was determined I needed to start a third form of immune suppression called Methotrexate. It is an older chemotherapy drug used to treat patients with auto immune diseases. And get this...it is working. Go ahead, let those last three words sink in. IT IS WORKING. My GVHD has never been this inactive. It's incredible, marvelous, fabulous, wonderful, miraculous, hallelujah-worthy, tear inducing news. Praise God that we found a drug that I tolerate that is effective against my stubborn little cells.

Clinic Appointment
However, it comes at a cost. I am very sensitive to the medication. Typically they prescribe medication by weight, and the dose I am currently taking would be prescribed to a three month old. Yet, I experience a slew of side effects that diminish my quality of life. Thankfully, my body seems to be adapting with each passing week of the therapy. The goal is to remain on Methotrexate for as long as it takes to taper my other immune suppressions, so at the least, a year.

After focusing on living in the present it is difficult to put such high expectations on the promise of a healthy tomorrow. It is a trade off of sorts, a gamble- my quality of my life now for the hope of a much improved long term. But ultimately, that is the goal- a life without debilitating fatigue and harmful medications. So far, Methotrexate is our best option. I won't stop working towards things I am passionate about just because I don't feel well, but I have to do them at a slower pace and in my own way. It means I have to accept that taking one class a semester is still progress. It means allowing myself to take as many naps as I need and forgiving myself for not getting out of bed on days I feel poorly. I've learned to prioritize my energy. If I want to do something, I set aside time before and after to rest, and choose what I want to do most.

Touring Florida
(no, I didn't smoke it)
Gammie's 80th
I have really struggled these past six months with identity. How do you find the balance of sharing good and bad news in a way that accurately represents your life amidst adversity? Some is too personal. Some is too painful. I am good with denial. That naive optimism has served me well. Not to be mistaken for ignorance because I pride myself on being well educated about what is going on in my body. I research tirelessly and ask questions until I get some speck of an understanding. But when it comes to emotions, my coping skills lean heavily on rejecting the truth, or at least avoiding dealing with it until I am farther from it. So, maybe when you ask how I am, I'll say "Good." in an attempt to spare you the details or to save myself the agony of admitting how embarrassingly unproductive my days can be. Or if someone asks how the chemotherapy is going I will only mention how helpful it is and leave out the part that for 4 days a week, I feel awful. It is not that I am trying to put on a facade, but nobody wants to hear me complain, myself included. Dwelling on the negative isn't healthy, regardless of how much there may be in my life, but at the same time, I can't ignore it. I am trying to strike a balance between honesty and moving forward. I don't need or want to identify myself as "the girl who had the transplant." Don't get me wrong, I am proud and grateful to be a survivor, but it is not who I am, just what I am doing.

Bieber, Bianca, & Me
My Instagram timeline is a collage of happy moments, grand experiences, and pictures I am comfortable posting. A more accurate depiction of my life would include all of those grand moments but also a lot of bags of M&M's, needles, medication, and hospital rooms. I like sharing those happy moments and crazy experiences; it helps me focus on the good things I have going on, which there are a lot of. In January I went to a meet and greet with Justin Bieber thanks to my new best friends, Mia and Cy! I planned a surprise birthday party from bed for my sweet grandma. One week, I got my chemotherapy overlooking the beach in Florida, and that night I went to a Beyonce concert and danced until I couldn't stand (no, really, that was a little scary, I shouldn't have danced that much.) I love going out to dinner with Chelsea and Johnny boy and visiting loved ones in Kansas City. But those are privileges I work hard for.

The bottom line is that every morning I get up with the goal of doing my very best. Sometimes, that means I get dressed up, go on vacation, or attend a concert. I always stop and think to myself "this is the kind of moment I fought so hard to get to." But most days, it is still just a me in a pair of pajamas, in bed remembering how far I have come and fighting so I can experience another one of those grand moments.


  1. I think of you often, Ceci, and remember you in prayer. In so many ways you have had the ultimate struggle, because it has affected you in so many areas of your life. Many people struggle with their identity and they haven't had the trials you have experienced. May you continue to look to God for your strength, your identity and most of all for your salvation. It is normal to question God when so much around you is unexplainable, but He has you covered! Sue Somero

  2. Ceci you continue to inspire those around you and those that pray for you from afar. I can't help but read your blog and wonder if you realize how talented a writer you are. You consistently make it possible for those that somewhat understand what you are going through AND those that will never understand, to see life through another's eyes. All my love, Denise Simpson

  3. I am a Grandma of a 17 year old grandaughter who was diagnosed with mds 2years ago and on the day we learned of her illness I was in a motel room and when I turned on the TV I saw you on AM america I believe, I have followed your blogs and your ups and lows . I believe that your story was a gift from above to let me know that we are not alone as she now has begun to face her life again after a BMT from her brother her only sibling a year ago. At this moment she is experiencing migraine headaches that interfere with her vision and therefore her HS classes. Like you she is a A+ student and was able to resume as a sophomore with her class after missing almost her entire Freshman year. She is currently a junior but has missed several months aat this time and is trying to work with a tutor at home 2x a week. tHANK YOU FO r your blogs and the hope you give me as she struggles with this as a 17year old . I think of you often and include you in my prayers every night.Please know that your blogs are a source of strength to me.

  4. Hi Ceci! It's Julie, with MDS in Australia, remember me? For some reason I just thought of you again & wanted to know how you're going. Wow, you are looking great :-) so happy for you. My MDS is a bit of a chronic battle. And my overseas donor is still waiting for me to get sicker...go figure. I have bad fevers a few times a year but generally inbetween, I'm doing ok on prevention antibiotics. Doing better with depression too, having new meds for bipolar, which has made such a difference to my life. Your story is very inspiring. Helps me to hang in there with this long journey. Bless you, your Aussie friend, Jules xoxo